Living grief lacks the tapestry of rituals, language, and social permissions around grieving that a person is offered with death. In death, that commemoration can help us feel closer to our loved ones. With living grief, it’s the opposite: ritual is like death by a thousand paper cuts, as it only reminds you of what you’ve lost. It can also lead to confusion or distance in relationships. I frequently hear from patients whose families or friends have ghosted them, sometimes after telling them they ‘ought’ to be better by now or are keeping themselves sick.

Living grief diverges from the collective and is an exercise in othering.

In a 1999 book entitled Ambiguous Loss: Learning to Live with Unresolved Grief, Pauline Boss discussed losses that remain unclear and unresolved because a person is simultaneously present and absent. Her own examples were family members grieving someone physically present but changed, such as with dementia or addiction, or someone who is missing in action. However, the concept also applies well to patients’ own experiences. We are, after all, grieving the parts of ourselves that are simultaneously here and gone. The illness itself can create ambiguity because symptoms fluctuate, which may prevent patients from fulfilling the roles society expects of them. It can also prevent validation of the loss of self, because a crisis of meaning has less objective ‘proof’ when it’s tangled within the dense webs of chronic illness — especially invisible illness. And the interminable duration of chronic illness is exhausting for the patient and their loved ones.

While my grief stems from one precipitating event, there is no one ‘thing’ it organizes itself around. It seeps into all sorts of nooks and crannies where I never thought to look, and creeps in without warning even during the times that I think I’m ok. What causes my grief is also the thing I need to make peace with and accept; every symptom, limitation, medical appointment, failed treatment, or activity that I can no longer do is a reminder of the identity I no longer have.

It’s constant work to reframe and not let myself stew in the emptiness of what I lack.

We don’t have the societal tools to support living grief, perhaps in part because of its ambiguity. But I think also because we don’t want to collectively admit that you can’t will your way to being better. I’ve discussed this in part in a piece I wrote about how people have told me to ‘just fight harder’ to seal my leak. In reality, I am determined to live every single day. Unfortunately, the output is not always what society thinks I ought to show for it. My life is reflected in the advocacy I’ve been fortunate enough to engage in, the papers I’ve helped co-author, and the writing that I hope helps people understand what it’s like to be this unwell. I don’t have progress pics or quantifiable changes to share with the world. Some days I can take a walk; other days I am stuck in bed. Vastly fluctuating capacity, even when mobility is limited, is part and parcel of long-term disability. Yet the discourse is often focused on poking holes in the patient: someone ‘is faking it,’ someone is ‘performing illness.’ That disconnect between the unified expectation of progress and the reality of chronic illness is part of what makes being sick this long so isolating.